A narrative approach to dementia

Engaging in storytelling and creating personal narratives enables individuals to construct meaning of the world and communicate their experiences and identities [18]. Narratives offer insights into individuals’ life trajectories over time as they represent more than a mere ‘snapshot’ of someone’s life at a set point in time [19]. Interest in the role of narratives as an approach to understanding the experience of living with illness has grown since the 1980s, and it has been suggested that chronic illness represents a “biographical disruption” [20] to a person’s life, altering one’s sense of self, identity, and relationships.

In recent years, the application of narrative approaches has extended its focus to exploring the unique challenges posed by chronic illness. In dementia research, the majority of existing narrative inquiries seem to have focused on the experiences of family caregivers or couples living with dementia [21, 22]. A few studies have also explored the experiences of people with dementia through their personal narratives [23, 24], with Buggins et al. describing participants’ narratives as “vivid and multi-faceted” [23]. Supporting people with dementia to share their personal stories offers a valuable opportunity for researchers to understand their lived experiences and contribute to a deeper understanding of the dementia journey.

Study aims

This study aimed to better understand the experience of disclosing or concealing a diagnosis of dementia to and from other people through a narrative inquiry. Specifically, we focused on the following questions:

1. How do people with young-onset dementia experience potential disclosure of their diagnosis on a personal and interpersonal level?
2. How does self-disclosure change over time in people with young-onset dementia?

Study design

This qualitative exploratory study adopted a narrative approach, with semi-structured interviews taking place between February and June 2022. The reporting of this study was guided by the COnsolidated criteria for REporting Qualitative research (COREQ) checklist, see S1 File [25].

Participants and recruitment

Initially, our aim was to explore self-disclosure in the general dementia population. Due to the overwhelming representation of participants diagnosed before the age of 65, however, we focused specifically on young-onset dementia. Additionally, participants had to be fluent in English and have capacity to provide informed consent. This study used a convenience sample, with recruitment taking place through Join Dementia Research (JDR), a UK-based platform connecting individuals to dementia research, UK-based dementia charities, and social media. Individuals who had participated in another research project and consented to be contacted were emailed to inform them about the study. Recruitment for this study started on 31^st January 2022 and ended on 10^th June 2022. The researchers of this study were not acquainted with the participants prior to the interviews, and no participants dropped out during the study.

Procedure

Prospective participants were contacted via email or phone to discuss the consent procedure and interview details, answer any questions they had about the study, and offer them the option to receive the interview questions in advance. Interviews were scheduled to take place approximately one to two weeks after participants received the study details. Participants took part in a single interview, conducted over the phone or online according to their preference due to COVID-19, and each interview was audio-recorded. Field notes were taken after each interview. Participants had the choice to include a family member for support. Demographic information was collected after the interviews had concluded, and participants received a debrief email along with a retail voucher as a token of appreciation.

Data collection

The interviews were conducted by a female researcher (GK) with experience in qualitative research involving people with dementia. At the time of the study, she was employed as an early-stage researcher at University College London and was pursuing a PhD in psychology. Semi-structured interviews were chosen for this study to balance the depth of qualitative data with the flexibility needed to explore participants’ unique experiences with self-disclosure, allowing them to share their thoughts and feelings freely [26]. We developed a topic guide (S2 File) based on existing research on self-disclosure in stigmatized conditions, consisting of open-ended questions (e.g., “Since you were told you had dementia, what kinds of conversations do you and people who are close to you have about the diagnosis, between yourselves?”). Follow-up questions were asked to gain a greater understanding of the topics discussed. Demographic information collected included age, ethnic group, gender, living situation, type of dementia, and time since diagnosis.

Epistemological stance

As narrative research is concerned with how individuals construct their own experiences into stories, including their interpretation and meaning making of them, this study took the position that there is no knowable reality or truth that can be ‘uncovered’. Adopting a social constructionist approach, we assume that the ‘reality’ of an individual is dependent on their narratives and not on social and material structures [27]. According to Burr [28], social constructionism is a perspective that assumes that individuals’ knowledge and understanding of the world is shaped by history and culture. Adopting this stance, we aimed to explore and understand how people with dementia have constructed their reality by examining their use of language and narratives to describe their experiences around self-disclosure [29].

Data analysis

All interviews were transcribed verbatim, and the transcripts were proof-read against the recordings. Participants were given a pseudonym and potentially identifiable information was removed. A narrative analysis was then conducted, based on Crossley’s [30] approach, which was specifically developed to analyze illness-related narratives. The analysis was carried out by two researchers (GK, WQK) in Microsoft Word. After reading transcripts repeatedly, both researchers independently identified the following concepts based on McAdams [31]: (1) narrative tone, which resembles the content of the story as well as how it was told; (2) imagery, which refers to the characteristic set of images that the narratives express; and (3) themes, which resemble the dominant patterns in the narratives. Interpretations of these concepts, along with any discrepancies between the researchers, were discussed with a third researcher (GC). The concepts were then combined into one coherent story for each participant by writing a short narrative summary, drawing on the descriptive phase of Murray’s [32] approach. In doing so, each narrative was ‘restoried’ to place the summaries in chronological order [33]. Lastly, a cross-case analysis was conducted to establish similarities and differences between narratives. Quotes demonstrating these similarities and differences were collected, grouped into three overarching categories, and incorporated into the write-up along with the respective quotes.

Ethical considerations

Ethical approval was granted by the University College London Research Ethics Committee (ethics ID 1696/001). All participants received oral and written study information prior to taking part and provided informed consent in writing. While dementia can affect a person’s capacity to consent, partly due to fluctuating mental capacity, all participants in this study were able to provide informed consent independently and demonstrated sufficient capacity. To ensure ongoing validity of consent, verbal assent was obtained at the start and during each interview by reviewing key consent details (e.g., participation is voluntary), verifying continued consent, and examining participant engagement throughout the interview.

Findings

Nine participants with young-onset dementia took part in the study. Their demographic details can be found in Table 1. The mean age was 63.7 years (SD = 3.93) and the range of having lived with the diagnosis was one to ten years. Everyone identified as White British, and all but one lived with their spouse, while Rachel lived alone. In the interview with Arthur, his wife clarified points if he struggled finding the right words.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Characteristics of participants.

https://doi.org/10.1371/journal.pone.0310983.t001

Narrative summaries

Interview duration ranged from 25 to 62 minutes, with a mean of 42 minutes. Each participant presented a unique narrative, with variations in speed and flow. Table 2 provides an overview of the analyses of core narrative, themes, tone, and imagery for each participant. Subsequently, a brief summary of each narrative is given. Words added or revised for context or to ensure anonymity are enclosed in square brackets ([]), whilst an ellipsis (…) indicates omitted text.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 2. Findings from analysis presenting core narrative, themes, tone, and imagery.

https://doi.org/10.1371/journal.pone.0310983.t002

Brian had routinized self-disclosure. Over the years, he became a vocal activist and was proud to share his experiences. He was not ashamed of his diagnosis and found it merely a “different way of retirement”. Positive reactions from others were an encouragement for him to disclose, although he also experienced negative reactions. While he had no problems sharing his diagnosis, he was more inclined to tell people he saw regularly: “The postman knows because we see him every day. But not the Amazon driver”.

At the time of her diagnosis, Amy was working in the healthcare sector but was made redundant. Identifying herself as a caregiver, she was open about her diagnosis to support other people with dementia. In doing so, she was able to carry on her caring function: “I tell people because I can’t change the diagnosis. And if you see someone with a problem, I want to help”. Since dementia is not easily visible, self-disclosure helped her to explain difficulties and receive support.

Rachel lives in a small community where the “jungle drums” spread the word about her diagnosis for her. She received support from a health professional who advised her “to be like you are in life anyway, very open”. Sharing her diagnosis with her wider social circle was “difficult” at times, as some people would “say things that are not appropriate or not kind”. She stated that dementia “is [a] part of me, it’s not all of me”, using these words to describe that she “absolutely” did not want to be defined by the diagnosis. She worried about disclosing her diagnosis in the beginning, saying “once I said it, there would be no coming back from it”. However, realizing that she wanted to “explain [her] actions” and that she would gradually need more support led her to share her diagnosis with others.

Initially “feeling very depressed”, Heather and her spouse made the decision to disclose the diagnosis openly. Her family reacted with disbelief and friends and acquaintances stopped speaking to her. At appointments, doctors would only address her husband. Overall, she experienced a lot of negative attitudes, with people assuming she was too young to have dementia, and a lack of empathy: “Not one person really has asked me how I was feeling … you can see the shock and horror in people’s faces when you tell them”. To raise awareness and support other people with dementia, she became active on social media. Sharing her diagnosis helped her to accept it: “It’s out in the open and so I can get on and live my life … I don’t have to hide from anybody. I could just be me”.

Ruth strongly believed that she is more than her diagnosis. Initially feeling shocked, she quickly discussed the diagnosis with family and friends to move forward and implement support strategies. She started disclosing it more widely to “not let it beat [her]”. She disclosed her diagnosis to everyone she felt was “relevant”, including strangers. Friends were empathetic and supportive. However, people at church reacted dismissively and she was not able to contribute as before. Since then, she disclosed more selectively to avoid having it “affect other people’s opinion of [her] before they get to know [her]”. She described being reluctant to disclose when it was not apparent, as she did not want to be defined by the diagnosis. Ruth became a strong dementia advocate.

Jane had been open about her diagnosis since the beginning. She and her family expected the late stages to come “really, really quickly”. Reasons for her openness were to explain symptoms and to receive support. Her disclosure “naturally expanded”, though she said: “I don’t go out shouting it, … but if somebody needs to know, I tell them”. She did not mind if people shared her diagnosis with others. Despite her wishes for support, she found it important that others did not make decisions for her. Reactions from others were positive, but she did not want “sympathy”, as “that’s not why [she’s] telling them”. She started sharing her life with dementia on social media to support others.

Receiving the diagnosis came as a relief to Arthur after he was repeatedly misdiagnosed, saying: “I don’t hide my disability”. After telling his immediate family, he disclosed his condition to people in his wider social circle. He could be selective regarding disclosure, with empathy being a quality he looked for. His experiences were mostly positive, though others, including some of his children, reacted with disbelief as the condition was not readily visible. Arthur stopped seeing people who were not understanding: “I want to be somewhere where I can do the things that I like to do in a safe environment with people that know of my condition, are empathic towards it, but not mollycoddling me”. Consequently, he became more socially isolated. His reasons for sharing his diagnosis were to raise awareness about his rare dementia and to stay true to himself as “it’s not fair to myself or to my wife to deny the fact that I have this condition”.

Eileen is “out and proud”. She had a difficult time adjusting to the diagnosis, thinking that dementia was for “old people”. Initially, she only discussed the diagnosis with her immediate family, choosing people who “wouldn’t go away and start gossiping about it”. She then trained as a dementia friend and started sharing her story, gradually disclosing her diagnosis to her wider social circle and people outside of it. Disclosing her diagnosis led to people acknowledging her needs and inquiring how she is feeling, which she appreciated. However, she also experienced dismissive reactions: “[They] would say, ‘Oh, but you’re fine … You don’t look like you’ve got dementia’. And now I find these things quite irritating because what does someone with dementia look like?”. Over the years, she became a dementia advocate, stating, “My life is really good … I have a real sense of purpose”.

Initially, Charles felt shocked and depressed about his diagnosis, having had to give up his job and driver’s license. His family was supportive but friends “were a different kettle of fish” and many turned away due to the “stigma that surrounds dementia”. Some individuals, including health professionals, did not believe that dementia could occur at a younger age. He was very open about his diagnosis, wearing a disability lanyard in public. He found disclosing his diagnosis “very therapeutic” and hoped that his openness would “make things better for [other] people living with dementia”. He became a vocal dementia activist and set up a local support group.

Cross-case analysis

While every narrative was unique, there appeared to be some similarities between them, for example, in terms of their experiences with other people’s reactions towards them. An exploration of these through a cross-case analysis generated three cross-case ‘themes’: 1) “It’s just an illness like any other”, 2) changes over time, and 3) impact of disclosure on interpersonal relationships and support.

Principal findings

Contrary to a previous qualitative study [12], all participants in this study had disclosed their diagnosis, offering a unique insight into self-disclosure in people with young-onset dementia. The findings illustrate participants’ experiences of self-disclosure as a personal and multifaceted journey. Their narratives highlighted the importance and their ability of preserving their identity amid the challenges posed by dementia. This study contributes to the ongoing debates about the persistence of the self in people with dementia [34] by demonstrating that participants exhibited a strong determination to stay true to themselves. Similar to Birt et al.’s [35] ethnographic study, participants accepted their diagnosis by viewing dementia as one part of their lives rather than the dominant one. Over time, this acceptance allowed several participants to disclose their diagnosis more widely within their social networks and beyond. Diagnosis acceptance has been suggested to play a pivotal role in people with dementia preserving their identities [36]. While a qualitative study conducted with people with young-onset dementia proposed a consistent loss of the self [37], this study uniquely found that participants felt confident in themselves, despite adjusting to changes caused by their condition. This underscores the importance of recognizing individuals’ identities beyond their condition or diagnosis.

Participants shared their views on the stigma associated with dementia, with several actively working to confront it. This proactive stance is similar to that described in a recent qualitative study involving people with young-onset dementia [38], where participants aimed to challenge the misconceptions that dementia is related to ‘old age’ and ‘an invisible illness’. Unlike Goffman’s concept of ‘discreditable’ stigma [39], which suggests that individuals might conceal invisible stigmas to avoid social devaluation, our findings illustrate a form of stigma management or resistance [40], where participants sought to reframe the understanding of their diagnosis by raising awareness and dispelling myths. This aligns with the broader literature on health-related stigma and self-disclosure, which recognizes the agency of individuals in addressing stigma through disclosure [14, 41–43]. While some literature suggests that concealing a stigmatized condition might protect individuals from harm [44], our study demonstrates that disclosure can be a strategy to challenge stereotypes. For example, participants openly disclosed their diagnosis to unfamiliar people or used strategies like wearing a disability lanyard, a method previously described as helpful for people with dementia [38]. This approach to stigma aligns with discussions in mental health contexts, where visibility and openness are seen as empowering rather than vulnerable [45].

Another approach for participants to combat stigma included taking on roles as activists. Active advocacy aligns with the broader discourse on the role of people with dementia as agents of change in shaping public perceptions, policies, and interventions [46]. In addition, the participants in this study seemed to have ‘blossomed’ in their new roles as dementia advocates. A recent systematic review found that dementia advocacy can provide people with dementia with a strong sense of purpose, enabling them to make contributions beyond themselves [47]. This seems particularly relevant for people with young-onset dementia who are often confronted with additional aspects of loss such as loss of employment [2]. As such, this study demonstrates how advocacy provided participants with a renewed sense of purpose and identity.

The participants’ narratives also revealed complex dynamics within interpersonal relationships following diagnosis disclosure. While many received understanding and support, some encountered disbelief and shock, aligning with previous research on the varied reactions to a dementia diagnosis [48]. Loss of social connections and lack of empathy following disclosure were experienced by some participants in this study. Our findings build on existing research, emphasizing that negative reactions from others to disclosure can lead to increased sensitivity in future self-disclosure in line with the Disclosure Process Model by Chaudoir and Fisher [10], which suggests that the recipient’s reaction influences future self-disclosure. Indeed, some participants in this study had become more selective in their disclosure due to negative reactions from others, similar to findings that were described by Weaks et al. [15].

Several participants found understanding and support through involvement in peer support groups, which can enrich the post-diagnostic experiences of people with young-onset dementia [49]. These groups facilitated support and new connections, a beneficial feature described as a sense of ‘collective strength’ in a previous interview study [50]. Participants who were initially open about their diagnosis but encountered negative reactions found a supportive community in these groups. Our findings highlight that peer support groups were essential in managing stigma and maintaining social connections, thereby enhancing participants’ social and emotional well-being. They also underscore the need for greater societal understanding and address the strain stigma and fear can place on existing relationships [51], while demonstrating the positive impact of peer support networks in fostering a sense of belonging in people with dementia.

Strengths and limitations

This is the first study to explore self-disclosure in people with young-onset dementia using a narrative approach, offering a rich and unique insight and detailed image of participants’ personal experiences. While this study adds to the body of dementia research that includes the voices of people with dementia, it has limitations.

Firstly, all participants shared a similar socio-economic and ethnic background. While narrative research does not aim to produce generalizable findings, future research would benefit from a more diverse sample encompassing various backgrounds and cultures, as individuals from different ethnic backgrounds may experience dementia-related stigma differently [52].

Secondly, we acknowledge that the experiences of our participants may differ from those of individuals with late-onset dementia. While not initially planned, all but one individual interested in participating had been diagnosed with young-onset dementia. One possible explanation could be the requirement of remote data collection due to COVID-19 regulations at the time, give that age can influence the acceptance of technologies used for this study’s data collection method [53]. However, it may also suggest that people with young-onset dementia face unique challenges related to self-disclosure. This is particularly relevant, considering that most participants in this study referred to the stigma associated with being diagnosed at a younger age. Future studies would benefit from exploring self-disclosure in people with late-onset dementia.

Thirdly, despite efforts to diversify levels of openness, all participants were comfortable disclosing their diagnosis as needed. A potential bias in self-disclosure research due to studies attracting participants who are more open about their diagnosis has been described previously [54]. Future research could consider purposive sampling to explore experiences and narratives of individuals who are hesitant to disclose.

Implications

The findings from this study provide implications for health and social care professionals, policymakers, and society at large. As revealed in the narratives, disclosure is complex and not always straightforward. Negative reactions, such as disbelief from family, friends, the wider community, and even health professionals, are common and can, in some cases, contribute to social isolation. Individuals not affected by dementia as well as health and social care professionals should be supported in enhancing their awareness and understanding of the various forms and symptoms of dementia, including those that can affect younger people. Furthermore, it is important to recognize that adjusting to the diagnosis can be a staged process that involves many emotions [55]. Health and social care professionals should be aware of this and provide individuals and their families with appropriate post-diagnostic resources and services to support them through the disclosure process and their dementia journey. This support might include interventions that empower people with dementia in their disclosure process, such as the ‘Who to tell, how and when’ intervention [56], as well as signposting to peer support networks like the UK-based DEEP network [57]. Policymakers are urged to prioritize the development of dementia-friendly communities to support and enable people with dementia to remain engaged and active citizens, similar to initiatives undertaken in the UK [58]. When designing services for individuals who are adjusting to a new diagnosis and considering how to share it with their social networks, it is not only important to acknowledge the expertise of people with dementia, but also to actively incorporate it. Conducting research with instead of about people with dementia aligns with an approach that is respectful of their continuing citizenship [36].

Additionally, the narratives highlighted misconceptions about dementia in general and young-onset dementia in particular. The experiences of participants actively engaged in advocacy and awareness-raising highlight the importance of reducing stigma and empowering people with dementia [59]. This underscores the ongoing need for initiatives that aim to increase dementia awareness and reduce stigma [60]. Research into the effectiveness of these interventions and programs is warranted to gather evidence-based insights into how to best foster awareness and promote acceptance of dementia within society.